IV iron therapy

[2restless]

I want to share my husband's experience with IV iron. He received low molecular weight iron infusion on October 8. His ferritin level at that time was 245. He had received a previous iron infusion 16 months earlier, which did nothing, other than bumping up his ferritin. I think they gave him the wrong formulation. He received 1000 mg of LMW iron, given over 1 hour. I got the protocol from Dr Buchfuhrer, which the pharmacist followed. This is the protocol used at Johns Hopkins and Stanford. Within 10 days he was sleeping 7-9 hours/night, usually in 2 settings. He'd sleep 3-4 hours, awake with mild RLS, be up for anywhere from 15 minutes to 2 hours, and return for another 4 hours of sleep. He had a few nights of 8 hours straight. His ferritin level 8 weeks after the infusion was 550.

For those of you who are really struggling, I'd urge you to talk with your physician about this treatment. My husband is on medicare, and they would not pay for it. We had the infusion at an out patient infusion center - the drug was about $330 and the nursing time $80. Injectafer, which has more evidence based studies than LMW iron, was far more expensive - several thousand dollars, so that was not feasible for us. These are the only 2 iron infusions really recommended for RLS. Don't let your doctor talk you into a different formulation.

I've seen some people talking about ferritin levels of 75 and their doctors not wanting to treat then with an iron infusion. A ferritin level is also an acute phase reactant. This means that many things - stress, infection, sleep deprivation, illness, will drive it up, so it is a very poor indicator of actual iron levels, especially iron in the brain. Dr Buchfuhrer says if the ferritin is less than 300 you can receive the IV iron. The 8 week level is the new norm for you. If symptoms return, a ferritin is checked again, and if less than 300, another iron infusion can be given.

The only bad news - my husbands symptoms returned with a venegenace 1 week ago. We are checking a ferritin level today. Don't really know what is going on with him right now, but his RLS is almost constant, and he has had only 10 hours of sleep in the last 5 days.

[stjohnh]

I want to share my husband's experience with IV iron....
For those of you who are really struggling, I'd urge you to talk with your physician about this treatment....

Don't let your doctor talk you into a different formulation.
...

Dr Buchfuhrer says if the ferritin is less than 300 you can receive the IV iron. The 8 week level is the new norm for you. If symptoms return, a ferritin is checked again, and if less than 300, another iron infusion can be given.

The only bad news - my husbands symptoms returned with a venegenace 1 week ago. We are checking a ferritin level today. Don't really know what is going on with him right now, but his RLS is almost constant, and he has had only 10 hours of sleep in the last 5 days.

I'm glad he had a good response, bodes well for the future. My 8 week ferritin after my first infusion was about 800. The literature says that the improvements from the first (and sometimes second) infusion sets last a shorter time than with subsequent infusions. The usual response, after initial sets of IV Iron, is usually in the 1-2 year range. My symptoms after my first Injectafer set started returning at 22 weeks. I am now at 6 months from my second set, and no return of RLS symptoms. I have had a 95% reduction in RLS symptoms from the infusions. They gave me my life back.

I completely agree that IV Iron is safe for those with RLS and ferritins between 100 and 300. Unfortunately the IRLSSG recommendations don't really say that. Hopefully further research will support RLS patients getting IV iron with ferritins between 100 and 300. It is hard enough to get doctors to give IV Iron to patients who have never received IV Iron even with a ferritin below 100. Nearly impossible for patients with ferritins between 100 and 300.

[2restless]

Wow, that is so encouraging, and I am so glad it has worked for you! Yes, when my husband was sleeping he was a new man. It is so hard to see him suffering so again. Just got his ferritin back and it was 345. That surprised me as 4 weeks ago it was 550. So he has dropped faster than I thought. Perhaps in another few weeks we can go for another one. I am wondering - did you do the Low molecular weight iron, or Injectafer?

I did not know about the improved relief of symptoms with subsequent infusions. Can you give me a source where you read this? I would like to share it with his physician.

Thank you for your kind response and help.

[badnights]

The 2018 consensus guidelines on iron treatment for WED/RLS address repeat infusions. A link to get the paper is in the page opened by clicking my signature-block link. It is section 9.3 of the paper.

It reads as follows:
IV Iron treatments will definitively increase peripheral iron stores. If iron treatment improves iron status as well as the RLS symptoms, the underlying cause of the deficiency may return. Clinical factors that may be helpful in deciding about repeat iron treatments are: (1) Did the initial treatment have clear symptom-atic benefits? (2) Did the initial treatment raise serum ferritin to high “normal” range or is serum ferritin still in the low to mid normal range? (3) Are symptoms now worsening because of a drop in peripheral iron stores? And (4) Are there safety concerns associated with repeat therapy? Decisions about repeating a successful oral iron treatment can be guided by serum ferritin levels dropping below 75e100 mg/l, which would indicate a possible benefit from restarting oral iron to reduce RLS symptoms. Deciding about repeating an IV iron treatment is more complicated since there is only one published Class IV study and very limited clinical expe-rience. No clinical guidance can be provided at this time. The consensus of the committee, however, is that the treatment is > 300 mg/l. As serum iron concentration is one of two values used to calculate the percent iron saturation, secondarily elevated iron values (on iron pills, failure to fast, heavy meat meal the night before) will give a false estimate of the true iron saturation. Serum ferritin within the first 6 weeks after IV iron treatment will tend to show a spurious elevated value, thus the recommendation to wait 8 weeks before the initial post-infusion levels. Serum ferritin values will also be elevated by inflammatory processes, and very high values should be evaluated in relation to the other iron measures. If concerned about inflammation affecting the results, repeat the iron panel later.